thereishope

Another tv spot on PANDAS!!!! http://www2.wjtv.com/jtv/news/local/articl..._pandas/147172/

I went ahead and posted it on the forums. I don't want to be bumping that thread and essentially "hijack" those discussion boards. So, we'll post it once and let it run its course. If they want to help, they will. I hope they do!

http://www.refresheverything.com/PANDAS Good morning! This note is from your fellow forum members across the board. Your “cousins” on latitudes…PANDAS. We will only post this once on here and will not “hijack” your discussion board, but we have something very important in the works. We have a submission in the Pepsi Refresh Project in May . We are trying to win $50,000 to go towards PANDAS research. We need your help! P.A.N.D.A.S. stands for Pediatric Autoimmune Neuropsychiatric Disorder Associated with Strep. When a child contracts strep (often without classic symptoms), the antibodies that are aimed to kill the strep turn on the child and begin to attack the brain causing inflammation. This causes dramatic behavior changes. A child suddenly has OCD, tics, high anxiety, sensory issues, and more. Most doctors are not aware of the complexity of PANDAS, how it presents itself, or how to treat it. This may lead to a misdiagnosis of clinical OCD, TS, or other mental disorders. With CORRECT DIAGNOSIS and treatment, remission is possible! Currently, there is a lack of funding for PANDAS research. If we win the Pepsi Refresh Grant, the money will go to continuing research and giving kids hope. Each vote will make a difference. Everyone can vote daily. Please pop on the website and vote. It doesn’t take long and it will really help. Thank you! Help Kids in Crisis! Refresh the Research! Vote Project P.A.N.D.A.S. http://www.refresheverything.com/PANDAS

Deleted to avoid confusion.New list later down in the thread

Welcome. It's hard and overwhelming at first. But try to view today as the beginning of his recovery. You know what you are fighting and, as a parent, you will fight as hard as you can and more.

Yes, you can comment w/o voting. So there's a trust factor involved. We're playing a clean game and will not say we voted when we don't. Not saying anyone on our team is, but who knows about the other teams.

Everyone's is slowing down. Let me email Kelly and we'll see if there's anything we can do to speed it along. As for commenting on other submissions, if you can't, I do suggest messaging one of us and we'll comment for you. We can do a lump comment like "50 votes from PANDAS". Luckily, my computer is slowing down a bit but not freezing....yet.

It's Deb C's daughter. Good job, Deb!

deleted to avoid confusion. See new voting list further down in this thread. Thanks!

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I say continue with the Ibuprofen for a few days after the fever breaks. With my son, I have seen the behaviors ramp up about 4 days post fever.

Yeah!!!!!!!!!!! Once my son started to overcome residual OCD head on, some other OCD tendencies would tag along and he'd shed them too. Not all, but some smaller ones. Keep up the good work!

deleted to avoid confusion. new list below.

Hm... I'm not having any problem except for taking a couple seconds to load comments. One way to speed a computer is to clean out temp internet files. Again, if you need help with votes, we can take some on or if you want to just cast the votes, but not wait for the comments to load up, let us know where you voted and how many you cast and we'll leave the comments for you. Unfortunately, the closer to the end of the month, it may work slower. The more people submissions get to vote, the more people on the Pepsi page, and then that slows it down. Some have notified Pepsi complaining about the lack of speed.

Tacoma isn't truly an exclusive ally. we will just not vote for anyone ahead of them in 25K. Kelly is working hard getting allies. A lot are formed already, esp if they were roll overs from April. So, for today, we are kind of "winging it" and feeling out who really is working for our votes. Hopefully, if they are voting, they are commenting and being truthful. With that being said, based on morning comments, this is a slightly revised list of voting suggestions. The main people are mostly the same since they have been consistent. The secondary are people trying to find an "in". AFTERNOON VOTING LIST FOR TUESDAY Always vote for PANDAS first so you don't accidentally run out of votes. Top supporters (pick 4 or 5) Tacoma Swim Club (new ally-show them some love!) Skip Program Jett Foundation MRA Sophies Cure(250K) Ride 192 K Synergy Sky U Secondary list of supporters... Phi Theta kappa (calimed they will send 300 votes today) Flagstaff Ride my Bike for ms camp out against cancer Ashlea Denton No kill kennell Nanty glo (they are nervous becasue they slipped) free to be Bethany Berg (they are nervous becasue they slipped) Fisher Middle hearing speech language in Denver Backpack program smileautism Glenwood I do have a suggestion or rather concern regarding exclusive allies. It seems to me that the more allies the better.

On our supporter list, this new ally only knocks out WMS and Stop SMA. Sophia's Cure (which is also SMA based) is still okay to vote for. They are in 250K catagory.

That website has a lot of glitches. If anyone ever sees an issue, defintitely let us know, but luckily they have all resolved themselves.

deleted since list changed. Don't want to confuse anyone:)

Update on Tacohma below!

Keep with the plan for the night. You never know. WMS may have a plan. Either not commenting or holding off voting until tonight so their former supporters don't know they had an alliance today and continued to vote for them throughout the day

First, if you went for a strep test a week and a half after finsihing abs,you could have gotten a false negative. Also, you may have had a delay in taking abs and seeing improvement because the antibiotics slows the strep and gives your immune system a chance to kill the strep. Then you have to wait for the antibodies to lower after the infection is erradicated. With my son, I may see some improvement during the course of antibiotcis, but it still takes a long time for recovey. I give Omega 3's as well and continue to do so even though he is in remission right now.

I wanted to add that if you had strep while pregnant and your child already had the "foundation" for PANDAS to surface later in life, I believe those antibodies that you produced would have been passed on baby in utero. Not that it is your fault. Don't ever think that. But it would explain those behaviors so early in life. But it is time to move forward and get him better.

Welcome. Has he had a strep test since that + one a year ago? there are a few things you can do now while you are searching for a PANDAS educated doctor. -Take your child for a strep test. I say start w/ a rapid. That comes back neg, have them run a culture. If that's negative, do blood tests as suggested above. -Rule out strep in all family members -Can he take Ibuprofen? For some kids that have PANDAS, that will ease symptoms. It's something to try. Does your son have a history of ear infections or sinus infections? Here's a list of very helpful threads. I suggest printing them out and reading them. PANDAS Fact Sheet http://www.latitudes.org/forums/index.php?showtopic=6265 PANDAS FAQ http://www.latitudes.org/forums/index.php?showtopic=6266 PANDAS Flowchart http://www.latitudes.org/forums/index.php?...ic=6688&hl= Also, here is a list of OCD symptoms as seen by PANDAS parents. Look through it. He may have OCD and you don't even realize it. Signs of OCD in a young child http://www.latitudes.org/forums/index.php?...ic=6153&hl= Doctors by State http://www.latitudes.org/forums/index.php?showtopic=6428 These are the names of the docs that most on here consider specialists. Dr B - Dr Bouboulis Dr K - Dr. Kovacevic Dr L - Dr Latimer Dr T - Dr Triffileti

I'm not having any issues this morning.I know the site majorly slows down if a lot of people are on it at the same time. It is also slow if you are voting on a page with a lot of comments. If you have a lot of proxy votes, you can go to the person's profile and choose what to vote for from their passed voting history. That goes a little faster. Then you can just make one comment on the pages like "PANDAS just sent 10 votes your way". If you continue to have issues, I can take on proxy votes or pass them onto to someone else. The problem might even lie with what type of interent connection one has? Not fully sure. If you vote through the person's profile, just remember that we are being a little more selective with our votes today. See pinned thread for more info.